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Thread: Seeking advice for further treatment strategy

  1. #1
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    Seeking advice for further treatment strategy

    I am looking for advice or some thoughts on further treatment strategy. You can see the full medical history under my profile, but the short version is PC/ACC w/mets at the liver. Did 9 cycles of FOLFIRINOX and had surgery in June where tail, spleen and 6 lymph nodes (all negative) were removed. So the question is whatís next? The doctors seem to be very skeptical to do surgery/RFA on the mets, I guess due to number/location (1 left side, 7 right side) they donít think it is worth trying. FOLFIRINOX has so far been very effective, actually there were regress in the mets from June to August even tough I had last chemo 12 May.
    My oncologist says there is no clear answer, but leans towards frequent pictures to monitor the situation. Iow, not start chemo before the cancer is starting to grow again. I am thinking that the chemo is still working, so why stop now. My preferred strategy is to kill so much cancer as possible, preferable all of it. I understand that is not likely, but since I have the rare version of PC (Acinar Cell Carcinoma), the treatment protocols and statistics are not clear. And I think normal protocol after surgery is to do chemo, but they normally donít do surgery on PC/IV. I have tolerated the treatment fairly well, but have had some signs of neuropathy after the surgery. I am also waiting for the molecular profiling result of the tumor done by Pertheria, hope to get it this week. I think I will wait for the result before I discuss with my oncologist again and then decide what to do. Would love to get inputs and perspectives that I should consider and bring to the discussions with my medical team.
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    August 17 - CT and MR show no new mets, existing reduced compared with pictures from June 17
    October 17 - CT show stabile disease - no new or enlarged mets
    November 17 - CT show stabile disease - no new or enlarged mets

  2. #2
    Hi. I don't know much about Acinar Cell Carcinoma. Is that slower growing than the usual type? I started adjuvant chemo six weeks after surgery. FOLFIRINOX might be too strong for adjuvant, how about Xeloda or Gemcitibine?
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time

  3. #3
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    Jackie, I think normally ACC is slower growing than PDA, but then again all cancers are unique so it is hard to say. Also the statistics for ACC are limited, so that is a challenge. In my case it seems like the cancer has not been so aggressive after I did the chemo. I am a bit surprised that the mets actually continue to shrink after I stoped with chemo. The larges lesion went from 21 mm to 15 mm from June to August, and I did my last round of FOLFIRINOX 12 May. I was also thinking about doing chemo that is not so hard on my nerves since I have some neuropathy after the surgery. My oncologist says it is normal, and they actually don't know why. I did not have any before I did the surgery. What about you, have you had any issue with neuropathy?
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    August 17 - CT and MR show no new mets, existing reduced compared with pictures from June 17
    October 17 - CT show stabile disease - no new or enlarged mets
    November 17 - CT show stabile disease - no new or enlarged mets

  4. #4
    I have a huge issue with neuropathy. The hands and feet started early on, then came the damage to the facial nerves. I find it difficult to say certain words (words that require full closure of the lips), and there's no way I could drink through a straw (not that that is important, but it gives you an idea of the nerve damage). I thought the numbness in my hands and feet would go away, but it hasn't. Even though it's summer I took out the heating blanket to put on my feet last night. Sometimes the numbness makes them seem cold. I'm going to see a neurologist in September.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time

  5. #5
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    Sorry to hear that Jackie, did you get it from the chemo or after the surgery?
    December 16 - diagnosed with Acinar Cell Carcinoma w/ metastasis (7) to the liver
    January 17 - started treatment w/FOLFIRINOX
    February 17 - allergic to Neulasta, had to stop taking the shots
    March 17 - 50% reduction of tumor and metastasis after 4 treatments
    May 17 - CT scan after 8 treatments: tumor 17x22 mm and well defined
    May 17 - Stoped FOLFIRINOX after 9 cycles to prepare for surgery
    June 17 - Surgery 22 June, Distal pancreatectomy, removed tail/body, spleen and 6 lymph nodes (all negative)
    August 17 - CT and MR show no new mets, existing reduced compared with pictures from June 17
    October 17 - CT show stabile disease - no new or enlarged mets
    November 17 - CT show stabile disease - no new or enlarged mets

  6. #6
    It was the Abraxane of the Gemzar/Abraxane combo. Before surgery.
    I also had my spleen removed. Do you happen to know why they remove it?
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time

  7. #7
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    Aug 2016
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    Jackie,

    Since January 2017 you stopped the chemo, and you still have the neuropathy until now? Any other side effect beside the neuropathy? My dad having so much problem with his digestion system ( diarrhoea ). Im not sure where can I find or buy the pancreas enzym, as the doctor seem didnt want to prescribe it.

  8. #8
    On Gemzar/Abraxane I started getting the neuropathy, and even though I stopped the chemo in January, I have the neuropathy still. Since April I've been taking something like Xeloda, an oral chemo. Neuropathy is not supposed to be one of the side effects of this chemo, I thought.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time

  9. #9
    Senior User
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    Aug 2016
    Location
    Malaysia
    Posts
    268
    Sorry for asking, you still taking the xeloda? Why? What I know is xeloda also can cause neuropathy too.

  10. #10
    Moderator Top User ddessert's Avatar
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    Quote Originally Posted by Dessmo View Post
    I am a bit surprised that the mets actually continue to shrink after I stopped with chemo.
    The CT scans cannot tell the difference between scar tissue and the tumor. It's likely that there is some scar tissue around the remaining tumor that is slowly being reabsorbed by your body. That also means that the tumor is probably even smaller still.

    I had neuropathy caused by the loss of muscle mass. I was told that the nerves rubbed against my joints (without padding?) and deadened the nerves. It went away with more weight gain.

    Does the initial pathology report (that told you it was an ACC) also state the differentiation type (well, moderately, poorly)? I think it is one of the indicators of aggressiveness.

    Does the CA19-9 reading tell you anything?
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

 

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